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People with CFS/ PVFS/ ME - how did you get diagnosed?

(995 Posts)
Grockle Wed 11-Jul-12 22:27:59

Long story short... After 2 years of symptoms, many blood tests, physio, chronic pain, constant fatigue of varying levels & GP not finding anything wrong, I am now depressed. It wasn't getting better with meds, so I;ve seen a psychiatrist who suggested it could well be CFS so has referred me back to the Rheumatologist.

I'm tired & just want to feel well.

stressedHEmum Wed 08-Aug-12 13:10:53

Fuzzpig, thank you. yeah, it's rubbish, but you just have to get on with it, don't you. I mostly shop online and even that leaves me knackered, all that concentrating and clicking!

Lentils, beans and other pulses are good for veggie protein and low fat, so they are good for you. I try to cook with them at least a couple of times a week for everyone, not just me. Eggs are good, too, but I really don't like them, never have. I'm actually a pretty garbage veggie because I don't like eggs, cheese or milk very much blush. I get B12 injections every 3 months and have calcium and VitD supplements from the GP, as well as my meds, but none of it seems to help much.

I'm like Belle - I really must stop moaning. So many people have things so very much worse than I do. I completely try not to moan in real life because people just don't understand how appalling I feel. I think everyone on here must get the same sort of reaction.

Leonie - I've had monthly blood tests for the last 2 years, sometimes weekly ones, fasting and otherwise at all times of the day, and there is never anything wrong with my thyroid or anything else except B12 and VitD. Apparently I should be ridiculously healthy now that they are sorted out, but I'm not. My illness started after I caught some horrible virus while I was on holiday in foreign climes. It knocked me for 6 for about 10 weeks and I've never really recovered.

fuzzpig Wed 08-Aug-12 13:30:05

That's funny (odd, not haha) stressed, doctors I've seen keep asking if I'd been anywhere abroad, been bitten etc, as they couldn't understand why this infection wouldn't feck off.

I cried at DH the other day because I felt guilty complaining about the pain when DH is in agony due to his arguably more 'real' injuries... he told me off. You just can't compare. It doesn't matter how bad your problems are compared to others, if they hurt, they hurt, and that's enough reason to come on MN and have a moan smile because where would it stop? Telling someone with no feet that they can't complain because they still have hands?

MN is brilliant for venting about things you can't talk about IRL - use it and try not to feel bad about it xx

mercibucket Wed 08-Aug-12 13:52:17

That's the great thing about mumsnet! Moan away!
StressedHEmum - have they looked into why your vit d and b12 are low? Do they pick up with the injections/tablets? It must be v frustrating to see the blood tests come back ok but not feel ok at all.

fuzzpig Wed 08-Aug-12 14:23:41

I was wondering about asking for those two vitamins to be tested as when I'd posted about my symptoms in the past people suggested it. Stuff like iron always comes back fine. Are d and b12 done with specific tests or are they under the full blood count? If the latter then I guess they must be fine as I've had frequent FBC tests. If not then do I just ask "can you test my d and b12 please"? confused

Or should I just go buy some supplements on the basis that it won't do any harm.

I think the GP yesterday was thinking of doing some blood tests but he said we have to wait a little longer as I recently had a course of steroids and he wants to let them get out of my system first.

stressedHEmum Wed 08-Aug-12 14:32:49

Merci - yes they pick up with the injections and supplements. I've had all the intrinsic factor tests, bone type tests and things like that and they all came back fine.

My B12 was only 114, so it was very, very low, VitD and calcium are just a bit low. Doc thinks that the B12 was caused by my body using it all up, basically, when I was ill after my holidays. I've been getting the injection for a year now, and the level of B12 has normalised. She seems to think that the D3 and calcium are dietary deficiencies and a chronic lack of decent sunshine (west coast of Scotland, VitD deficiency is not uncommon here). I've not been on the supplements for long, but will find out if they are working at my next blood test.

It's v. frustrating, because I should be "jumping up and down" according to my blood results, but I'm not.

Fuzzpig, that's the thing, isn't it? It just doesn't seem like a "real" illness and lots of people don't think it is. Someone actually told me that ME was a made up illness and someone else that it was caused by too much drinking. I think that because I look alright, there is a bit of a lack of understanding. It's a bit like my DSs AS, you can't tell by looking at them, so there is nothing wrong with them.

It is good that we can come on here and moan a bit, it helps keep me sane, tbh. I spend the entire time trying to put on a brave face in RL, so being able to talk about it here is a relief.

Thanks to all for support thanks

stressedHEmum Wed 08-Aug-12 14:41:02

I have my levels tested as part of a FBC but the GP always puts them on the form thing specially under other tests. The Vitd test here has to be sent to Dundee because it's specialised test, it takes about 6 weeks to come back normally.

I think the B12 showed up in a normal test, but I've had so many I can't really remember. The intrinsic factor is a specialised test to see if the B12 deficiency is caused by pernicious anaemia.

I would definitely ask about a B12 check and a VitD check wouldn't hurt, especially after the summer we've had. I would just ask your GP if they've been checked and if not get them done.

fuzzpig Wed 08-Aug-12 14:44:11

YY to the Aspergers thing. I am actually waiting for my own assessment for AS (in fact the CPN is supposed to be phoning me today about it <glares at phone>) so while I have not known the 'label' long I certainly know what it's like to get the "but you look fine" thing angry

CFSKate Wed 08-Aug-12 15:54:48

Gut bacteria, weight gain, autoimmune diseases and autism.

Article quotes Professor Jeremy Nicholson - He also speaks here

Invest in ME are fundraising for an ME centre, if fundraising achieved - first project to be looking at the gut.

Thomas Borody also worth a look.

Grockle Wed 08-Aug-12 22:48:09

I teach children with severe autism & am fairly sure I am a little autistic. DP says I'm 'special'. I try to keep my funny ways to myself which is why I like my job - the children help me straighten & line things up. I'm away tonight & had to straighten all the picture frames in the wall before I could settle in My room. And change the toilet roll so it was the right way round blush

I'm also the only veggie in our house but have lapsed, mainly because I really can barely manage to cook things to suit everyone. I really don't like eating meat though - it makes me feel fat & bloated.

Fuzz pig - I also have a prolapsed disc but whilst it is painful, I can manage & cope better with that than I do the other joint & muscle pain. Whatever the cause, constant pain is miserable. And 'invisible' illnesses are so hard.

I will ask for a printout of my bloodtest results - I forgot last time as I was in so much pain & feeling miserable.

fuzzpig Thu 09-Aug-12 10:00:09

I didn't realise you could actually get a printout of results.

Unfortunately the last lot of bloods haven't, AFAIK, been given to the GP - because I'd been seen at the hospital for an urgent X-ray, and the unit there did bloods. All they seem to have sent is a quick discharge letter as they didn't even send the (clear) X-ray result. But the hospital doctor did look over the results at the time (saying inflammation was high due to chest infection) so presumably she would've said something if any of the other results were bad? (not entirely sure what they were testing but they took 3 little bottles).

Currently pondering the balance between "Internet-induced hypochondria" (or rather the appearance of it) and "being armed with knowledge". Have been reading a little - nothing heavy as I am really struggling with tiredness - mostly just looking up terms that I've seen mentioned particularly on that longer thread linked to earlier. Particularly struck by the 'orthostatic intolerance' - that has been a massive problem for at least the last 15 months and I never knew there was a name for it! Even standing for our (5-10min) staff meeting leaves me feeling faint and constantly shifting my balance so as to stay upright, while boggling at the fact my colleagues manage to stand so easily. I had a 24hr ECG last year and because it didn't show an actual heart problem I have spent months thinking I was just unfit - even though massively increasing activity has done nothing to change it.

I realised I have been 'pacing' pretty heavily since starting my job, though again I didn't think of it in those terms. Even when I only worked 18hrs I knew I couldn't do anything (barring perhaps 2hrs in town after which I would be almost as wiped as if I'd done a full day at work) on my days off - I knew I would be in agony the next day. After work I would be unable to get off the sofa and often be near to tears because of being tired and sore. All my full time colleagues would talk of doing things on their days off or even just cooking their dinner after work, and I would wonder how the hell they managed it.

At first I put it down to "getting used to having a job". I was a SAHM before and certainly not sporty, although I was capable of walks and the gym and so on, but not as active as I should have been, and in any case the job is more physical than say office work. DH (despite his many injuries) voluntarily took on ALL the housework to allow me to adapt to working life. I have felt guilt for this, and shame that I must be really unfit despite doing so much at work.

But I didn't get used to it even in 8 months of 18hr weeks. Full time is hell despite me being much happier in my new slightly higher role. I am still finding myself totally incapable of anything outside work. Apologies for massive and hijacky post (and I hope nobody here thinks I am being a google hypochondriac) but I am a little freaked out. And I feel a bit stupid because I've suffered like this for over a year (symptoms started before I started work) without doing anything about it because I just waited for it to get better on its own.

What does this all mean sad

belleshell Thu 09-Aug-12 13:03:45

Hi Fuzzpig can you think of anything that happened 18 months ago that could have triggered your chronic fatigue! because thats what you have. i think the viral myalgia is all part of the same problem. when i think back to my 1st true episode, it was following a year from hell. But when i think back i had been having symptoms beofre this event i had always just managed to get on with it, but after my 1st recordable episode that set the wheels in motion and meant i had every test known to man all of which where normal, my recovery was slower adn more episodes followed. im lucky that i have managable symptoms on a daily basis, tiredness, pain, brain fog, visual disturbance, constipation etc...but it when these 'crashes' happen that i literally take to my bed and hope for the best. This isnt the best management butthe one i feel helps because i just remove myself from the world.......obviosly when the kids are about i care for them but im lucky that i have a very loving and understanding partner, who helps. The guilt however is a killer. i have been laid this morning think that im useless and i really need to pull myself together. i havent taken pain kilers (becasue i cant drive when i do) and i have dragged myself into work to check emails and drop off sicknote. that took 1 hour i am now back in PJ and in agony. when people ask how i feel i dont know what to say, i really feel like saying im F**KED off thats how i feel. Knackered doesnt even come clsoe to my tiredness atm, and pain is invisable isnt it...

eeekkkkkk soryy another rant, but for all those reading this and knowing how i feel i hope oneday we all get a magic wand....x

fuzzpig Thu 09-Aug-12 13:20:48

I'm not sure about any discernible trigger. I've been trying to think back as so many people have said their symptoms started after illness. I wonder if maybe it was around then that I had tonsillitis for the first time in over a decade (I have had it I think 3 or 4 more times since) but can't be sure. It may have been another chest infection as I have always been prone to those. But whatever it was, it was nothing like the infection I've had since June.

And <hollow laugh> at the word 'recordable' - that really struck a chord, I think the way to sum up the last year plus would be that I've felt ill the whole time and that as soon as I have a 'recordable' illness I'd rush to the doctor (which I rarely did before, even my pregnancies had very little medical attention) because I thought FINALLY! I can get some help and, TBH, a 'reason' for resting.

Grockle Thu 09-Aug-12 15:24:16

Fuzzpig - my psychiatrist said to go to my GP about EVERY tiny thing now... so that it was always recorded. For example, the fact that I've had a sore throat 6 times this year is not noted anywhere because I don't bother going to GP because I am there so often anyway blush He said it's important to make sure these things are recorded. But, TBH, I'd never leave the GP's room if I went every time there was 1 tiny thing wrong.

mercibucket Thu 09-Aug-12 18:58:37

You can definitely get a print out of all blood test results and I highly recommend doing so, then checking all the results. You might need to ask for them with the reference ranges. In particular, check tsh (under 2), t4 (if not done, it should have been!), ferritin (not at bottom of range), b12 (over 500), folates (if not done, ask), and vit d. Those are some of the main ones for bone/muscle pain, fatigue etc. No doubt there are more, I only know the ones relevant to me
There is also a theory in the thyroid world that fibromyalgia and cfs are often thyroid insufficiency. The theory goes that the tsh test is new (ish) and before it, a GP would assume thyroid probs and treat with natural thyroid (t4 + t3) and the patient would get better. But now, the tsh test (which doesn't test your thyroid at all) misses some people so they get diagnosed as cfs or fibro instead. This is just what I read. There are some doctors who treat with a trial of t4 to see if symptoms go. It is not a mainstream treatment. For more info, ask on thyroid uk's site at health unlocked

ArthurPewty Thu 09-Aug-12 19:47:01

Message withdrawn at poster's request.

fuzzpig Thu 09-Aug-12 19:59:11

Will do. Booking an appt tomorrow.

fuzzpig Thu 09-Aug-12 21:58:54

Is there anything particular I should be saying to the doctor? He's really nice and thorough (hence I always ask for him when booking) so I'm not worried about that aspect, but I don't want to be all 'expert patient' if there's a chance that will be a bad move.

Also, is hairloss relevant? I know after you give birth it's normal to lose some hair (since it gets thicker during pregnancy) and I did briefly after my first baby. I did after my second too - but it never stopped. He turns 3 this month! I am always finding masses of hair in the plug and clogging up the Hoover etc and it always comes out when I brush, which never happened before. I do have thick hair though so while it is distressing I don't know if I should mention it.

belleshell Fri 10-Aug-12 03:26:14

im sorry for pinching your thread, but it is kinda relevant, i wondered how everyone describes their pain? this is something i really struggle with. i have two type, the one i get daily (and when i have done too much) is like someone as grabbed the top of my right leg,so tight i lose feeling and then it is painful to the point where i limp, and i dont know where to put myself, my fingers on right handburn with pain!!, the second pain i get is when im in crisis, and i feel like i have a lead suite on and im walking throu treacle....everything is such an effort... how do u explain yours!

fuzzpig Fri 10-Aug-12 07:24:27

Mine is like the lead suit/treacle thing.

Have you ever seen the X men movie (can't remember which of them) where they show how Wolverine gets his adamantium skeleton? (or whatever it is, I'm not as much of a fan as DH!). You see him being submerged in water by the scary scientist guy and they inject his whole body with this pearlised grey liquid. That's how I describe it - when the pain suddenly comes on it is like somebody has injected me with the heaviest metal on earth and I can feel it flowing to every part of me.

Hips are 'in a vice' though, and lower back is a bit like period pain.

Can you tell I feel like shit this morning grin

ArthurPewty Fri 10-Aug-12 08:27:34

Message withdrawn at poster's request.

Grockle Fri 10-Aug-12 09:40:06

I get general fluey type aches and pains daily, with stiff hips & back pain like when I was in labour. When I've done too much, it's like the lead suit/ treacle thing - I can barely lift my feet to make the next step.

In between those 2 stages, my legs begin to feel heavy & wobbly, hence using a walking stick to give me extra balance & security.

fuzzpig Fri 10-Aug-12 11:02:25

Leonie. I sense you are trying to hint at something.


I have an appointment for Wednesday - so earlier than the 'couple of weeks' he said to come back in. Hope he doesn't object. Wasn't actually expecting to get one so soon (yes that is 'soon' for our surgery!)

Will definitely mention the hair loss. And my hands. They feel sore sometimes, on my palms, like the skin is too stretched and dry. That's another one that has been bugging me for a long time but never enough to make me do something (other than get through my body weight in hand cream!)

ArthurPewty Fri 10-Aug-12 11:11:40

Message withdrawn at poster's request.

Grockle Fri 10-Aug-12 12:18:32

This is very interesting. My hair falls out a lot too & I have been discharged by the dermatologist with periodic episodes of eczema/ dermatitis and very dry skin. Never thought to link any of this.

Oh, and my cough seems to have returned. It usually takes a good 2-3 months to shift it.

fuzzpig Fri 10-Aug-12 12:32:05

I don't have dry skin anywhere else. Is it under active thyroid you are referring to btw, rather than over?

Coughs are crap aren't they, mine had virtually gone but I'm back with a really sore throat again since yesterday angry feels like I've got little balloons of poison in my throat <poetic>

Really sick of it, it's like I'm not allowed to get better. I have two more weeks of certified sick leave but it doesn't feel like enough, even though I really miss it.

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